How do I compellingly advocate for my privacy with doctors and other healthcare professionals?

beantaco:

OP is trying to make a positive change in healthcare privacy, and this reads as defeatist. Society won’t change until people like us identify social issues and make them known to the masses.

Exactly. Even though we’ve got a long fight ahead of us, and we may not win every battle, it is absolutely worth it to advocate for our privacy in healthcare and elsewhere.

Something I forgot to mention in my response to @mnalis’s last comment and I think is important to remind people is that I have had positive experiences advocating for my privacy.

Doctor refuses to see me because I expressed reservations about having to share my social security number. What should I do?

I previously had an appointment with a GP in the same clinic, and I asked the same question to the receptionist. Similarly to the dermatologist’s receptionist, she didn’t know what to say. However, the GP overheard me from her office, and yelled that she would answer my question during our appointment, which she did. Thoroughly. I appreciated it.

This was the very first doctor I saw over a year ago. Her receptionist didn’t have the answer, but she did. I had completely forgotten about it because most of my experiences have been negative. But this was a very positive one. As I said, she was thorough. She went into details about how they protect privacy, the type of medical software they use, and under what circumstances data can be shared with third parties. So far she is the only doctor who knew how to answer this question, and her answers were not full of technical IT jargon.

UPDATE:

I have written to my local data protection agency (DPA), and I am waiting to hear back from them.